What is Hospice?

What is Hospice?

Hospice is:

• Medical care for people with an anticipated life expectancy of 6 months or less when a cure isn’t an option, and the focus shifts to symptom management and quality of life. 

• An interdisciplinary team of professionals trained to address the person’s physical, psychosocial, and spiritual needs; the team also supports family members and other intimate unpaid caregivers.  

• Person-centered specialty care stresses care coordination, clarification of care goals, and communication.

• Provided primarily where a person lives, whether a private residence, nursing home, or community living arrangement, allowing the patient to be with essential objects, memories, and family.

• Care that includes periodic visits to the patient and family caregivers by hospice team members. Hospice providers are available 24 hours a day, seven days a week, to respond if patient or caregiver concerns arise.

• The only medical care that includes bereavement care, which is available during the illness and for more than a year after the death for the family/intimate network.

• Medicare benefits are benefits that all Medicare enrollees have a right to. Hospice care is also covered by most private health insurance at varying levels and, in almost every state.

Hospice is not: 

• Focused on curative therapies or medical interventions designed to prolong life.

• A replacement for nursing home care or other residential care.

• 24/7 care in the majority of cases.

• Care that hastens death.

Who is eligible to receive hospice care?

•  Adults with a terminal illness and a lifetime prognosis of 6 months or less are eligible for hospice care.
•  Hospice care is also available for children and adolescents. Rules and regulations regarding hospice services and coverage for children differ from those utilized in the adult population.
•  Common diagnoses of those who receive hospice care include but are not limited to cancer, heart disease, dementia, Parkinson’s disease, lung disease, stroke, chronic kidney disease, cirrhosis, and Lou Gehrig’s disease (ALS).   

When is it time for hospice?

To receive hospice care, a person does not have to be bedridden or in their final days of life. It is most beneficial when the patient and family can receive care early to take advantage of the many benefits hospice care can offer. As long as medical eligibility is met, hospice care can be used for months.

Hospice should be considered when:  

• Despite medical treatment, physical and cognitive status significantly declines. This may include increased pain or other symptoms, weight loss, extreme fatigue, shortness of breath, or weakness.

• The goal is to live more comfortably and forego the often physically debilitating treatments that have been unsuccessful in curing or halting a life-threatening illness.

• Life expectancy is six months or less, according to physicians.

• The person is in the end stage of Alzheimer’s or dementia.​ 

How does someone initiate hospice care?

Many individuals and families could benefit from hospice care but need to learn how to access hospice services. Some are afraid to discuss it, some wait for a physician to suggest it, and some don’t know that they can initiate hospice care on their own as long as they meet eligibility criteria.

At Hospice Foundation of America, many individuals and families tell us they wish they had known about and used hospice services earlier.

It’s essential to let healthcare providers know that hospice care is preferred and not wait for them to raise the topic.

To qualify for hospice services: 

• A hospice physician and a second physician (often the individual’s attending physician or specialist) must certify that the patient meets specific medical eligibility criteria. These criteria indicate an individual’s life expectancy is six months or less if the illness or condition runs its typical course. These established criteria vary by illness and condition.

• Typically, the attending/specialist physician knowledgeable about the person’s medical history refers the patient to hospice care, and the hospice physician confirms hospice eligibility.
• Self and family referral is possible (the person and family may contact hospice directly), but physicians must confirm eligibility before receiving care.

If a physician does not agree to refer for hospice care or if the individual has not seen a physician for many years, the person may still be eligible for hospice care. They or their family members may contact a local hospice provider for more information on the admission process.

What services does the hospice provide?

Most hospices follow Medicare requirements to provide the following services, as necessary, to manage the primary illness for which someone receives hospice care:

• Time and services of the care team, including visits to the patient’s location by the hospice physician, nurse, medical social worker, home health aide, and chaplain/spiritual adviser

• Medication for symptom control, including pain relief

• Medical equipment like a hospital bed, wheelchairs or walkers, and medical supplies such as oxygen, bandages, and catheters

• Physical and occupational therapy*

• Speech-language pathology services*

• Dietary counseling*

• Any other Medicare-covered services needed to manage pain and other symptoms related to the terminal illness, as recommended by the hospice team

• Short-term inpatient care (e.g., when adequate pain and symptom management cannot be achieved in the home setting)

• Short-term respite care for family caregivers (e.g., temporary relief from caregiving to avoid or address “caregiver burnout”)

• Grief and loss counseling for the patient and loved ones who may experience anticipatory grief. Grief counseling is provided to family members for up to 13 months after a death.

*Access to these services is determined on a case-by-case basis based on the hospice team’s assessment, the team’s goals of care, and disease progression and symptom burden. 

What’s not included in hospice care?

• Treatment, including prescription drugs, is intended to cure a terminal illness or other illness unrelated to the terminal diagnosis unless the other disease is causing an increased symptom burden.

• Prescription drugs and supplies prescribed to treat an illness or condition unrelated to the diagnosis that qualifies the person for hospice.

• Room and board in a nursing home or hospice residential facility.

• Care in an emergency room, inpatient facility care, or ambulance transportation unless ordered by or arranged by the hospice team.

Where is hospice care provided?

Hospice care comes to the patient wherever they may be.

• Hospice services are provided where a patient lives, which may be their private residence or that of a loved one, an assisted living center, a nursing home, or, in some cases, a hospital.

• Some hospices have long-term residential centers where services are provided. When hospice care is provided at a residential center, the patient/family remains responsible for the costs associated with the residence, as they would for any other home.

• If patients need 24/7 care, hospices may transport them to a unique inpatient facility for a short period to manage their symptoms and then return them to their homes.

Who Pays for Hospice Care?

Medicare Coverage

Most patients are eligible for Medicare, which covers all aspects of care and services. There is no deductible, though there may be a small co-payment for prescriptions and respite care.

Medicaid and Private Insurance

In most states, Medicaid offers similar coverage. Many private health insurance plans, including those from employers or state/national exchanges, also provide benefits, although the extent of coverage may vary.

Military Families and Veterans

Military families have coverage through Tricare. The Veterans Health Administration (VHA) offers services and contracts with local providers. Veterans with the VHA Standard Medical Benefits Package are eligible without a co-pay.

Self-Pay Options

Providers accept private payment, known as “self-pay,” an option for the uninsured.

Essential Requirements for Hospice Care

Caregiving in a Private Home Setting

Care at home generally requires a family caregiver or another caregiver, such as a friend or hired help. Learn more about caregiving here.

Length of Stay and Eligibility

There are strict federal rules about the length of stay and eligibility. Possible changes to care may include:

• Extensions: Care is given in benefit periods: two 90-day periods followed by an unlimited number of 60-day periods. Medical eligibility typically depends on the physician’s opinion that the patient’s life expectancy is six months or less. Patients can be re-certified for care if they live longer than six months and remain medically eligible.
• Discharge: If the patient’s condition stabilizes or improves, they may no longer meet medical eligibility and will be discharged. Their Medicare benefits will revert to the coverage they had before.
• Revocation: Patients may choose to pursue curative therapies, such as entering a clinical study, requiring them to withdraw from care. This process is known as “revocation.”

Discharged patients and those who choose to leave can re-enroll anytime, provided they meet the medical eligibility criteria.